My follow up appointment was today and it went very well. Dr Hepworth said I need to give it at least five more weeks to fully assess, but I am feeling pretty good, and the stitches and bandage are gone.
What he found in surgery he said was “quite a tangle.” My right jugular vein was completely occluded. After removing the styloid, venogram showed it was still blocked farther down my neck. Dr H went back in (same incision) below my omohyoid muscle and there was scar tissue there compressing my vein. Once he cleared that it was flowing well. He suspects the scar tissue was from a whiplash injury. I’ve been in several minor car accidents so I am guessing it was from one of those. None of the accidents ever required medical attention after, but I don’t doubt there could have been some injury. He said he’s “not just optimistic but confident” the surgery will have helped, and he’s seen people with similar anatomy to mine do very well. The styloid did need to go as he said it’s “like the mast of a ship” tethering everything together, so it was adding to my issues.
Thank god he takes the venous portion of the condition seriously because had he just removed my styloid and moved on, i don’t know I’d have had full relief. My neck and shoulder pain I had pre surgery are completely gone. I’m still having headaches occasionally but they are much less intense. He said it’s too early to judge that anyway.
I’m desperate to get off of opioids due to the stomach issues so he put me on Celebrex. I have a one month follow up around thanksgiving and another in January. For first bite, he recommended drinking a lot of water and eating sour things to kind of “unclog” my salivary gland as he said it’s likely congested from swelling. I hadn’t heard that advice before so wanted to share it. Eating sour things sounds so painful right now but I could definitely do better at hydrating.
My pain is well managed and I think I turned a corner yesterday. I’m suffering more from opioid side effects so will be happy to get off those. The scar looks good and getting the stitches out didn’t hurt just felt weird.
That looks great, heling well! So pleased that you’re seeing benefits from surgery already & that Dr Hepworth is confident things will go well for you. Sounds like he was really thorough checked venous flow & good he found the scar tissue- so a better chance for you of a good recovery.
I’ve not heard about his suggestion of unclogging the salivary gland- from what I’ve read first bite is an irritated nerve following surgery which causes the pain, but worth a try! I’m sure Isaiah has mentioned before that keeping hydrated helps…
Hope you can get off all the painkillers soon!
Thanks for the updates, so helpful for others to have this encouragement!
Yeah I thought the same but I’ll pretty much do whatever he says LOL. Oh; he also said to try mouth exercises like I’m yawning and open my mouth wide to help with it.
I’m so thrilled to hear that you are doing better than right after surgery! Thank you for such thorough posts, blossom! They are extremely helpful for me, and I’m sure for many others! I love hearing that you’ve turned a corner. Yay! I also love hearing how thorough he is and that he found that compression further down. So amazing! It’s hard for me to fathom relief from neck pain and less severe headaches, but you are giving me much needed hope! I can’t remember if you struggled with vertigo? I hope you just continue to heal and get better everything single day!! ❤️🩹
I’m so glad you’re doing well! And how interesting what is suggested for first bite!
Keep on keeping on! You’re doing great and the incision really looks awesome!
Thanks @Eagle1 you are in very very good hands with Dr H. I knew that before my surgery but even more confident in his abilities now. All things considered I felt recovery was actually easier and less painful than my everyday pain, if you can believe it, but when you are in the thick of recovery it can be hard in weird ways. I missed being able to take baths (can’t soak the venogram site for a week) and it was hard to think of things that sounded good to eat. One thing I wasn’t expecting was how emotional I felt and sometimes sad/weepy/just upset. I also picked (small) fights with my partner and my mom so I was kind of irritable which I did expect. My pain was well controlled most of the time so I don’t know if this was a side effect of the pain pills for me or the gravity of the situation hitting me finally or what. Even today I just started crying because I’m so grateful I made it to the other side side and went through with it, found such an amazing doctor, this forum, everything. It’s hard to explain but my emotions have been heavy and I’ve been feeling everything intensely.
I didn’t have vertigo necessarily but I had dizziness with certain activities and positions and felt like I was going to pass out sometimes. I haven’t really been able to test that yet because it was usually with bending down and exercise and things like that. The nurse mentioned potentially doing a follow up ultrasound of my veins in a few months to check on things… that impressed me. They really want to make sure that all is good. I never felt left in a lurch or anything like that in the first week.
I’m wishing you all the luck and good vibes and positivity for your upcoming surgery! I know it’s going to go great. Hang in there.
Also I am glad my posts have helped! It’s helped me a lot to digest what’s going on and write them. Hopefully not too detailed haha. Thanks everyone here for being such great supporters and cheerleaders. I can’t say how much it means to me.
I found staying super hydrated (80-100 oz fluid/day) was the best thing I could do to help relieve my FBS symptoms. Also, putting food in my mouth & letting it sit for a few seconds before starting to chew helped sometimes.
I CANNOT imagine sucking on sour things!! That would have killed me (not literally) but it would have been beyond excruciating! You can try it though. I agree w/ what Jules said - FBS is caused by an overly excited parotid gland (or the nerves to the gland) & is often the result of surgeries in the area of the neck where ES surgery occurs. Though I still have mine to some degree, it’s much reduced from its original state & there are days when I don’t have it at all. WHEW! Such a relief!!
@Bopper thank you so much! I’m amazed myself!
Today I had absolutely no pain whatsoever and didn’t even need to take anything for pain. That’s other than first bite pain but that’s manageable if I brace myself. Thankfully it really is just the first bite. I find holding/pressing my cheek for the first bite helps some. I actually felt normal aside from some tenderness and sensitivity around the incision (pulling and weird feelings mostly.) Normal meaning pre surgery pain is gone as well as surgery pain. I still get a tad grossed out when I accidentally touch my scar haha. My ear and neck is mostly numb over there. But I didn’t have a headache at all, I had no neck pain. I cleaned my house and was able to do that without any problem. I’m feeling great. I know healing isn’t a straight shot and I am expecting some ups and downs… for example I did take a muscle relaxer, Tylenol and ibuprofen yesterday. But wow! I can’t believe I feel this good on day 10. I wasn’t expecting that.
My scar is kind of itchy so I’ve been putting cerave healing ointment (similar to aquaphor) on it occasionally. Just with Colorado being so dry I feel like it helps some. The Celebrex Dr. H prescribed worked well for pain but it gave me a rash so I haven’t been taking it over the weekend. Other than that, so far so good. I feel like I could probably return to work as a nanny (I watch a friend’s 4 month old) but I have the week off and the baby’s grandma is filling in, so there is no rush.
The true test for me I think will be hiking, biking and exercising to see if I get dizzy/lightheaded and pounding in my head. I definitely haven’t pushed myself that hard and don’t plan to for at least a few more weeks.
Thank you so much for the update. I’ve been checking in to see if you have posted the latest. I can’t tell you how happy I am that it is going so well! Please keep keeping us posted
So great to hear that update Blossom
That’s lovely news! So pleased that you’re recovering well
Dr. Samji recommends Mederma w/ sunscreen once the incision is closed (i.e. stitches out or absorbed). It worked great for more. It’s available on Amazon & at most drug stores i.e. Walgreens, CVS, Rite Aid, Target…Jules recommended Bio Oil in the past & we’ve had a couple of members who found silicone scar reducing patches came in handy. So many options!
I’m so glad you’re feeling good, blossom. Do start physical activity slowly i.e. a mile hike, bike ride, etc. instead of 10 mi. or whatever you do. I did a 15k race at 6 weeks post op, & it was a mistake. I took my time but ended up having to walk the second half & had some symptoms flare for awhile after that. Just call me impatient!!
Day two in a row of virtually no pain, besides some incision discomfort and first bite pain which is whatever, I don’t count it as real pain because it’s not constant. I’m pretty excited!
I have a permanent retainer and unfortunately it broke yesterday. It was cutting my mouth. So I went to have it removed at the dentist… don’t want to brag but I can’t believe I was able to hold my mouth open and wide enough on day 12 or whatever day it is.
I can sleep on my right side now too. It’s not always the most comfortable position but it’s not painful.
Good that you’ve had another painfree day, & you could open your mouth wide at the dentist! Will you get another retainer?
@Jules yes I have an appointment to get fitted for a removable one I would wear at night. The permanent ones break and are so painful and a hassle.
Yay, Blossom! So wonderful to hear such good news. I can hardly wait until it’s our turn. Long wait still, but did get DD scheduled for April surgery. We love Dr. Hepworth and only expect great things.
Sadly the girl is in deep depression right now, with her upcoming heart repair and seasonal affective disorder. After 7 years of pain and multiple misdiagnoses, she is done. So we parents get to carry her over the finish line. Thanks in advance for all the support.
@NAWAS I’m so sorry for your daughter. Im sorry she’s suffering. She is in good hands but the waiting is so hard. Hang in there!